Monday, June 18, 2018

Epilepsy Blog Relay: Subtle Seizures

This post is part of the Epilepsy Blog Relay™, which will run from June 1 to June 30, 2018. Follow along!

When our daughter had her first seizure it was not in a way I would have thought a seizure would look like. It was subtle, quick, and questionable. I honestly wonder how many seizures in her first days I missed, or how many I saw but attributed to something else. I often wonder if I felt them in utero, or if her first one occurred right after birth. In hindsight, the "wonky eye movement" we saw, that was attributed to just being "weird baby" have become her trademark. So many times her simple eye roll will be missed by those who are unfamiliar with her, and to be honest even those who know her extremely well can still miss these types, or just think she is being sassy. They are so fast that epileptologists who are not her own have missed them on an EEG. They happen when you turn your head to pick something up, when you blink, when you open the fridge, or when you rub your eyes. They are less than a second and look benign.

So many times when I point out a seizure to someone who has just met Sonzee the responses are always the same, "Oh wow, I never would have known that was seizure" and "How did you know that was a seizure?" The worst part about her trademark eye rolls are that they are just as devastating to her brain as her other types. They tend to occur in clusters, seconds apart, and for lengthy periods of time. They are the most difficult type for us to stop. It is this type that resulted in a call to 911, multiple rescue medications, and at the time a new to her fancy diagnosis of "non-convulsive status epilepticus".

Before 2015 I had never thought about seizures much less known anything significant about how they might present. Our family has now seen so many various presentations of seizures that our family is quite proficient in identifying most (if not all) types of seizure activity. It is amazing that our 5, 6, and 8 year old can tell you the intricacies of different types of seizures. What is so important to know about seizures is that they are not always obvious and they are not what you might envision.